We had a busy week and I got a bit behind on my A-Z of Cystic Fibrosis, so you may see a couple of back to back posts from me over the upcoming days. The following information was copied from the Cystic Fibrosis Foundation FAQs.
What is the life expectancy for people who have CF (in the United States)?
There is no way to accurately predict how long a person with cystic fibrosis will live, as many different factors affect a person’s health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases.
In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantage of starting specialized treatments that were not available even a decade ago.
Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.
In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.
The steady rise of the median predicted age of survival suggests how improvements in treatment and care are advancing the lives of those with CF. In 1955, children with CF were not expected to live long enough to attend grade school. Today, thanks to continued Foundation-supported research and specialized care, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage and families of their own.